Referred back to haematologist: GP has referred... - Thyroid UK

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Referred back to haematologist

Nekko profile image
9 Replies

GP has referred me back to haematologist because my ferritin is back below 50 again.

Ferritin 32 ug/L (30 - 400)

MCV 80.2 (83 - 98)

MCHC 396 (310 - 350)

Haemoglobin 113 (115 - 150)

Red blood count 4.38 (3.80 - 5.80)

White cell count 7.11 (4.00 - 11.00)

MCH 28.1 (28 - 32)

Haematocrit 0.40 (0.37 - 0.47)

Platelets 247 (140 - 400)

Iron 6.1 (6 - 26)

Transferrin saturation 13 (12 - 45)

Diagnosed with iron deficiency in 2014 with ferritin and MCV below range. MCV still below range now. Low ferritin treated with iron infusion in May last year, above results taken 3 weeks ago.

I have symptoms of feeling cold, tiredness, hard stool, hair loss, weight gain, pins and needles, cramps, bone pain, dry skin. What can I do or say to make sure my iron/ferritin doesn't go back down again please? Any advice appreciated thanks

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Nekko
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Clutter profile image
Clutter

Nekko,

You probably need to supplement iron after your iron infusion to maintain levels. Your haematologist should be able to advise you.

Nanaedake profile image
Nanaedake

You need a maintenance dose. Ask the haematologist to instruct GP to prescribe a maintenance dose and check levels at intervals.

Ask Haem what he/she knows about how Hashis affects nutrient levels and nutrient absorption? - You might get an idea of whether he/she's informed about thyroid disease or not?

Nekko profile image
Nekko in reply to Nanaedake

The last one I saw says I have thyroiditis so I think he is quite clued up

Clutter profile image
Clutter

Nekko,

Did GP increase Levothyroxine dose?

Nekko profile image
Nekko in reply to Clutter

Yes

SeasideSusie profile image
SeasideSusieRemembering

Nekko

"What can I do or say to make sure my iron/ferritin doesn't go back down again please?"

If you are being referred back to the haematologist then you will probably be given another iron infusion. Once your level has improved, maintain it and the easiest way to do that is to eat liver regular, maximum 200g per week. Otherwise you may need to buy your own iron tablets which you will need to take with 1000mg Vit C to aid absorption and help prevent constipation and iron needs t be taken 4 hours away from thyroid meds and 2 hours away from any other medication and supplements as it affects their absorption.

Pins and needles, cramps, bone pain, can be indicative of other low nutrient levels. You should have Vit D, B12 and Folate tested.

Nekko profile image
Nekko in reply to SeasideSusie

June 2017

Vitamin D total 33.4 nmol/L (25 - 50 Vitamin D deficiency. Supplementation is indicated)

Folate 2.3 ug/L (2.5 - 19.5)

Vitamin B12 241 pg/L (190 - 900)

Ferritin 32 ug/L (30 - 400)

Been taking 800iu D3 since 2014 when vitamin D was 35.1 nmol/L. Diagnosed with iron deficiency in 2014 with ferritin and MCV below range. MCV still below range now. Waiting for GP appointment next week for next B12 injection since I have changed practices. Tried to get this arranged over the phone but new GP refused to order B12 injection because she hadn't yet seen me and as a result I cannot take my folic acid until after I have my B12 injection. I have symptoms of feeling cold, tiredness, hard stool, hair loss, weight gain, pins and needles, cramps, bone pain, dry skin. Any advice appreciated thanks

SeasideSusie profile image
SeasideSusieRemembering in reply to Nekko

Nekko

Well the B12/folate is being taken care of.

Has your GP not noticed that after 3 years of taking 800iu D3 your level is now lower? The best thing you can do is just treat yourself and I suggest that you follow the NICE Clinical Knowledge Summary for treating Vit D Deficiency which is loading doses totalling 280,000-300,000iu over a few weeks. You could take 10,000iu daily for 4 weeks then reduce to 5000iu daily and retest in 3 months. When you've reached the level recommended by the Vit D Council, which is 100-150nmol/L - then you will need a maintenance dose which may be 2000iu daily, may be more or less, it's trial and error.

When taking D3 there are important cofactors vitamindcouncil.org/about-v...

D3 aids absorption of calcium from food and K2-MK7 directs the calcium to bones and teeth where it is needed and away from arteries and soft tissues where it can be deposited and cause problems.

D3 and K2 are fat soluble so should be taken with the fattiest meal of the day, D3 four hours away from thyroid meds.

Magnesium helps D3 to work and comes in different forms, check to see which would suit you best and as it's calming it's best taken in the evening, four hours away from thyroid meds

naturalnews.com/046401_magn...

Check out the other cofactors too.

Ferritin needs to be at least 70 for thyroid hormone to work, recommended is half way through it's range.

SlowDragon profile image
SlowDragonAdministrator

Your vitamins struggle to stay up because your Hashimoto's was not correctly treated. You were extremely under medicated. Hashimoto's affects gut function

So have you had dose increase of 25mcg Levothyroxine?

This will need retesting in 6-8 weeks. Dose increased in 25mcg steps until TSH is around one and FT4 towards top of range and FT3 at least half way in range

All thyroid tests should be done as early as possible in morning and fasting and don't take Levo in the 24 hours prior to test, delay and take straight after. This gives highest TSH, lowest FT4 and most consistent results

Poor gut function can lead leaky gut (literally holes in gut wall) this can cause food intolerances. Most common by far is gluten

According to Izabella Wentz the Thyroid Pharmacist approx 5% with Hashimoto's are coeliac, but over 80% find gluten free diet helps significantly. Either due to direct gluten intolerance (no test available) or due to leaky gut and gluten causing molecular mimicry (see Amy Myers link)

But don't be surprised that GP or endo never mention gut, gluten or low vitamins. Hashimoto's is very poorly understood

Changing to a strictly gluten free diet may help reduce symptoms, help gut heal and slowly lower TPO antibodies

thyroidpharmacist.com/artic...

thyroidpharmacist.com/artic...

amymyersmd.com/2017/02/3-im...

chriskresser.com/the-gluten...

scdlifestyle.com/2014/08/th...

drknews.com/changing-your-d...

Improving vitamin levels is essential. Getting dose increased and strictly gluten free are all key

Read as much as possible about Hashimoto's. Medics know little

If after all these steps, in say 4-6 months, FT3 remains low, then like many with Hashimoto's, you may need the addition of small dose of T3

Dr Toft, past president of the British Thyroid Association and leading endocrinologist, states in Pulse Magazine,

"The appropriate dose of levothyroxine is that which restores euthyroidism and serum TSH to the lower part of the reference range - 0.2-0.5mU/l.

In this case, free thyroxine is likely to be in the upper part of its reference range or even slightly elevated – 18-22pmol/l.

Most patients will feel well in that circumstance. But some need a higher dose of levothyroxine to suppress serum TSH and then the serum-free T4 concentration will be elevated at around 24-28pmol/l.

This 'exogenous subclinical hyperthyroidism' is not dangerous as long as serum T3 is unequivocally normal – that is, serum total around T3 1.7nmol/l (reference range 1.0-2.2nmol/l)."

You can obtain a copy of the articles from Thyroid UK email dionne.fulcher@thyroidUK.org. print it and highlight question 6 to show your doctor.

Also ask for list of recommended thyroid specialists, some are T3 friendly

Prof Toft - brilliant article just published

rcpe.ac.uk/sites/default/fi...

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